Raleigh Hills mom strives to raise awareness and money for research on CDH birth defects

View full sizeDominique Fong/The OregonianLiz Dooley, 37, and her 19-month-old daughter, Finley, play together on a rainy day at home.

When Liz Dooley was pregnant with her second daughter, she learned at an ultrasound checkup that the baby's organs were not growing in the right places.

"It took me a few times before it really sunk in," said Dooley, a Raleigh Hills resident, about her initial understanding of the health condition.

Dooley's daughter has left-sided congenital diaphragmatic hernia, or CDH, a potentially life-threatening birth defect in which the baby's diaphragm hasn't closed entirely. Lower organs, such as the stomach and spleen, could shift into the cavity, preventing the lungs from developing properly. One in every 2,200 to 5,000 babies have the defect, according to the U.S. National Library of Medicine.

On the day that her baby was due, Dooley, 37, said she stayed remarkably calm, buoyed by the prayers of her friends and family.

And on Aug. 12, 2010, Finley Dooley was born at Legacy Emanuel Medical Center. The baby girl stayed nearly two more months in the hospital for surgery and recovery in the neonatal intensive care unit before going home.

Advances in neonatal and surgical care at specialized hospitals have boosted the survival rate to 80 percent or higher, but Dooley said she knows several mothers whose babies died from health complications.

"I have a heart for moms whose kids haven't made it," Dooley said. "I don't know why I'm so blessed we could take our child home."

Finley has grown into a very happy, feisty girl, she added.

Dr. Sanjay Krishnaswami, Finley's primary care doctor, is researching how to help more CDH babies survive and have fewer health problems as they grow older. Krishnaswami is a pediatric specialist at Legacy Emanuel and a pediatric surgeon at Oregon Health & Science University.

Krishnaswami's research focuses on making smaller cuts during surgery to sew up holes in the diaphragm.

When gaps in the diaphragm are large, surgeons use a prosthetic to patch the organ. A prosthetic, however, doesn't stretch as the patient grows and could detach, increasing the risk for hernia in the patient, Krishnaswami said. He hopes to develop a material that can grow with the patient.

Money from the Ladybug CDH Foundation will pay for part of that research, as well as support families whose babies are in the hospital, such as food, gas cards and hotel stays for people who come from Washington or Idaho, Dooley said.

Dooley said the foundation will also be a resource for mothers who feel scared or confused about the birth defect. Dooley found comfort through moms she found on blogs and Facebook, she said.

"I really needed them," Dooley said. "My other friends are great but they don't know what it's like. It was nice to call someone who knew what it was like."

When she was in the hospital, Dooley noticed parents who were doing runs in honor of or in memory of their kids.

Dooley, a runner, dreamed while she was pregnant with Finley that she would try running again. "I felt inspired," she said.

Dooley organized the Ladybug Run, which includes 5k and 10k races scheduled for Aug. 12, Finley's birthday, in Champoeg State Park.

Dooley said no matter what the doctor initially says, parents should continue to hope for the best.

"I've met moms whose babies were given a 1 percent chance at life, and that baby made it," Dooley said. "You have to hold tightly on to that hope."